As most of you know, Oliver has been battling pneumonia since the end of June. It didn't respond to his usual antibiotic, that has worked so many times in the past 9 months. We tried a second, broader spectrum antibiotic. On day 3 when his lungs sounded even worse we realized we didn't have time to "wait and see" if it would eventually start working, so we started a third, even harsher antibiotic to kill off the bug infecting his lungs. He was on this one for only 2.5 days and had explosive diarrhea, and was becoming dehydrated. He was also losing massive amounts of weight. In just 2 weeks he dropped from from 33 lbs to barely 28 pounds. We could see all of his bones, he didn't look like our sweet chubby cheeked Oliver anymore, he looked like a skeleton. On Wednesday we had to stop this third antibiotic, his lungs only sounded worse, and the dehydration was taking it's toll. We didn't know if we had any options left, but our hospice nurse called his Dr, who spent the next two hours researching possible courses of action. Meanwhile Oliver developed a mottling pattern in his skin on his feet, ankles, and partly up shins. Mottling is a blotchy bluish pattern that occurs when the limbs aren't getting enough oxygen because the body is reserving all it's oxygen to run the vital organs. This was ominous. It's a sign your body is shutting down. In adults once mottling of the skin starts, death usually occurs within 24 hours.
Our usual worry became a sickening terror. It takes over your body, you can't focus on anything, except the fact that you might have to say goodbye really soon. How on earth do you prepare for that? Since last April we've known the horror of imagining our son's last moments, it's a thought we've tried to lock deep in the back of our minds since we heard the words "terminal" and "no treatment options". Even locked away, even "making each moment count" we always knew it was there, like a shadow over our small moments of happiness. But imagining and experiencing are never the same thing. How will we possible handle the indescribable sadness of holding our baby as he takes his last breaths? He's 3 years old! He's our baby, we shouldn't have to do this!
We asked our nurses if we could be alone and we spent the night crying and cuddling our little boy. We got a phone call around 6:45pm, there was another antibiotic we could try. Just one. Last one. Last hope. Chris sped to the pharmacy to pick it up. We are grasping at straws, but knew we had to try it or we'd never be at peace. He had that first dose on Wednesday night, and yesterday(Friday) his lungs sounded no better, and he still has a fever, though the skin mottling has faded down to just the soles of his feet. Our nurse said kids are like that, they don't give up as easily, they fight, fight, fight, they rally. We don't know yet if it's working or not.
We're giving it time, it's all we can do. His breathing is easy, and he's been sleeping a lot, but he's comfy and peaceful and whether this antibiotic works or not, that's all we're asking for.
As only someone caring for a terminally ill loved one would understand, we find ourselves torn at times, at all times actually, torn between wanting to try everything and anything on the face of the planet to help him and just, well, just letting him go, letting him be done fighting, letting him be at peace. We know we're losing him, we've been watching him fade. MLD has stolen everything from him, there is really only one more thing for it to steal. When do we just let him be at peace? There is no right answer, there is no wrong answer and our answer is always changing.